View Full Version : Current ANCA/PR3 titre levels

02-11-2009, 04:04 AM
I've just returned from a clinic appointment with my latest blood test results and it shows that my ANCA is only 23! I'm really happy with this considering 4 months ago when I was admitted into hospital it was 329 and at my last clinic appointment 3 weeks ago it was still 58.

I'm loving the azathioprine (Imuran) now that I'm on the correct dose and I'm no longer anaemic, and my kidney function is now back within normal range.

For me to be in drug controlled remission the ANCA needs to drop to under 5 acccording to my PCT and it certainly looks like it might happen.

I'd be interested in hearing what everyone else's current ANCA number is and how long it's taken to get it where it is today.

Sorry for those of you who perhaps aren't doing so well but I thought you all might appreciate a bit of good news, even if it isn't your own.

02-11-2009, 05:01 AM
Hooray for you!!! What great news that you're doing so well.

My doc at Johns Hopkins Vasculitis Center said he doesn't rely on the ANCA. It's useful for some people, who's ANCA drops as their treatment works. Mine stays off the chart (over 4,000) no matter what we do. Actually, it has climbed to that as the treatment has worked! So for me he doesn't even order it anymore. He says the other test results (like your kidney function) and how you feel are much more accurate.

02-11-2009, 08:27 AM
My last test three months ago was 36 down from 42. I need to call up and get my latest results. Hopefully will be down to my regular mid-20's.

02-12-2009, 11:10 AM
Congrats Luce. I saw my rheumatogist today. He didn't quote (he does like to do say specially, so I don't obsess. I ask about every other time) my ANCA or CRP levels but said I'm getting closer to being back in remission. He wants me stay on Cytoxan until next September. Then he'll try methotrexate.

02-12-2009, 07:39 PM
Glad you are doing so great Luce. In Canada once ANCA is more than 200 they just say its greater than 200. I have been on pred 50 and cyclo 150 for 4 months, after going down (2 weeks ago ANCA was down to 23), now its up at 56. My creatinine is up to 104 with low GFR so kidneys not doing so good. On friday I have another test hopefully its a bit better again. I'm beginning to hate this our disease. So hard to get into remission. This is my second bout. first time I stayed on cyclo for 6 months and at the same time tried to lower pred from 30 to 5.5, Two weeks after stopping cylco I started to cough up blood so back on cyclo after another battery of tests, this time for a longer period. My rheumy is not as optimistic this time, but then none of my specialists are knowlegable about WG, so I'm on my own (or at least feel that way).

02-13-2009, 02:28 AM
Jolanta, I'm so sorry to hear all that. I'm concerned that your docs aren't Wegs-savvy. I had docs like that for a year and it really wore me down. I got injured because of their lack of knowledge at times, was put on higher doses of chemo and pred than I needed. I was also told there were no other drug options except for cytoxan, so if that didn't work I'd die. And of course, I was told countless times I was crazy for reporting some symptoms or because I wasn't getting better!

The Vasculitis Foundation has Wegs docs who will consult with anyone's local doc and guide your treatment, all for free. My doc, Philip Seo at JHU, is one of them. Is that something you'd be interested in? Usually a local doc is very happy to have input from the Wegs docs, because they know they're in over their head.

Being at the mercy of my local docs for so long, I've become very gun-shy about my docs. I'm often afraid to tell them symptoms or think I have to figure it all out for myself. Or I just automatically go on the defensive with them. Really impedes my care. I don't want that to happen to you.

02-13-2009, 08:33 AM
Hi Jolana, I second Sangye's suggestion of a WG consult doc they are really worth it.

11-13-2013, 05:33 PM
My husband is in the hospital right now and we are waiting for the biopsy report. He had an open-chest biopsy. He has been on pred for 2 months while waiting for the biopsy. His PRe is 11.9 and his MPO is 0.2. What are your thoughts on this?

Dirty Don
11-14-2013, 04:19 AM
Hi Shenight, you may want to put this info on a new thread as people may not see this entry here. Best of luck to you and your husband. I don't understand why docs went thru chest for biopsy...mine was done thru my ribcage just under my right arm...hmmm. Please let us know your stories.

11-14-2013, 04:25 AM
Don, I did post a new members post and no one responded to it. :(

Dirty Don
11-14-2013, 07:47 AM
You've got some now! I didn't see the initial post...jumped the gun on ya! Sorry bout that! Best of luck!